The Megan Foundation

08/22/2016

Thank you to our Megan Foundation supporters over the years! We are now The 20/20 Project, a 501(c)(3) supporting Usher syndrome - stay tuned for our new website and page!

09/03/2015

Ryan Thomason Owns The Equinox in the days leading up to Usher Syndrome Awareness Day on September 19, 2015 by discussing the challenges in employment for those living with the disorder - take a look!

It's been nine days of so many people with Usher Syndrome doing amazing things to raise awareness for the upcoming World Usher Syndrome Awareness Day on September 19th! The Usher Syndrome Coalition...

08/31/2015

Usher Syndrome Awareness day is September 19, 2015 and Molly Watt living with Ushers Syndrome is showing her support through the campaign! If you have Usher syndrome send her your selfie with a quick bio about yourself to help spread awareness of what it "looks" like living with deafness/blindness.

In honor of Usher Syndrome Awareness Day on 19 September, Molly wants to show the world what our community looks like.

08/05/2015

Blind Institute of Technology is a non-profit organization in Denver that strives to solve the "national visual diversity employment problem while enhancing personal and professional relationships." Their new Blindersblog focuses on helping the community understand the power of listening and their first entry, "A Homeless Guide Home," is a beautiful start to that mission. Be sure to follow them today!

A Homeless Guide HomeBy admin Posted July 29, 2015 In BlindersBlog 0 0 One snowy day earlier this year on the popular and pedestrian-friendly mile-long 16th Street Mall in downtown Denver, I was trying to find a safe place to board the free mall shuttle. Due to the snow that had piled up it became d…

08/03/2015

Living with Usher syndrome can make easy conveniences a daily struggle. A mother of two adorable children, Andi no longer drives and is unable to take her children to the park because of her Usher syndrome. A playset in her very own backyard seemed to be the only solution for Andi to put some fun back into her life… so we bought one for her!

To learn more, read Andi's story here: https://goo.gl/HmTPIy

07/31/2015

What's on your visual bucket list? Parents of Lizzy, a five year old diagnosed with Usher Type II, plan on taking her to see the Northern Lights, Grand Canyons, Niagra Falls, and Yellowstone National Park - tell us what's on your list!

The parents of a 5-year-old in central Ohio have created a visual bucket list for their daughter after she was diagnosed with a condition that will eventually cause her to go blind.

07/24/2015

Here's some inspiration to start off your amazing weekend! Becca Meyers, winner of the EPSY awards and who lives with Usher syndrome, is proof that hardships, real or imagined, can never stop you from achieving your dreams!

Becca Meyers' fairy-tale week continued Thursday in Glasgow, Scotland. Still in awe after her ESPY award win the night before, the two-time Paralympic medalist broke her second world record in three days at the IPC Swimming World Championships, taking more than a second off the previous mark to fini…

07/20/2015

Need some ? Check out Megan's latest post on living with Usher syndrome, and the story of her journey in meeting her Leader Dogs for the Blind guide dog, Sunshine.

Five years ago today I was sitting at my desk in a state of the arts office of a prestigious architecture firm, staring at my computer screen as I stabbed at my mouse clicker. It was the Monday of my second week at my architecture internship, but instead of being immersed in CAD drawings I was immer…

07/17/2015

Have a beautiful weekend everyone!

Cheers!
Megan and Sunshine

07/16/2015

Proud of Mark Dunning and what he has to say in his new blog post, describing the excitement of real tangible treatments for Usher syndrome! Now it's only a matter of time... how far we have come in 7 years!

I saw my friend Carol recently. She was traveling with her seven year old daughter Sara. Carol has Usher syndrome and her vision is fading. She will soon lose what is left of it. There will be a day in the not too distant future when she will see Sara smile for the last time. And given that she live…

07/06/2015

As many in the Usher syndrome community know, the cost of hearing aids range from $1000 to $3500 per ear. Medicare and most insurance companies do NOT cover costs related to hearing aids, resulting in a huge treatment gap for those who are unable to pay for these valuable instruments to drastically increase their quality of life. Tell us about your experience below.

Despite the impact hearing aids can have on quality of life, they remain out of reach for too many Americans.

07/04/2015

Happy Fourth of July! One week until the Usher Syndrome Coalition's 7th Annual Family Conference in New Orleans! Register for the event to learn about the latest research and connect with other families living with Usher syndrome!

The Usher Syndrome Coalition is dedicated to helping families cope with Usher Syndrome while working diligently to find a cure. Our goal is simple: Provide hope to families with Usher Syndrome.